Debaroo

Natalie, you mentioned that your mom has 4 leisions to the brain..do you happen to know their sizes? Have you looked into Gamma Knife? It is a procedure that has been around for decades, but until recently was only available in Penn. and, MD. It is a very non-invasive procedure, done in 1 treatment for all mets at once. I have posted more detailed explanations of it in the Late Stage NSCLC forum, look for an orig. post by Alyssa re:gamma knife, and I posted a reply to it. My dad had Gamma Knife in January 2003, and experienced no side effects. The gamma knife is a high dose of radiation that is pinpointed, using 3D MRI, with dosages calculated for each individual tumor. The tumors are killed in that treatment and then reabsorbed by the body at the same rate as their orig. growth rate. Its pretty amazing stuff. If you'd like to ask me any questions, feel free to message me, or e-mail me. My dads oncologist immediatly scheduled radiation for the brain mets, but I called him and told him to cancel, because I got a nerologist that does Gamma knife, and he saw my dad and said he was a candidate for the procedure-so we are going with that. He was very pleased at our research. The hospital that offers the procedure had just purchased the equpment 6 months before my dad needed it!!! As I understand it, most doctors don't even know that the procedure is becoming more available. The neurologist that did my dads gets patients from all over the country. He has been doing the procedure for years, traveling to PA and MD to learn how to do it, and then implement it himself. Keep us posted on how your mom is doing. I'm really not sure about what dosages, or how many would be done with regular radiation. I would ask your moms onc. ALL of the questions that you have, so that you're not left in such a confusing place. Take care, Deb

Shelly, the steriods reduce the swelling which help the symptoms of the brain mets dissapate. It is good that they are working. I remember in Dec when Dad started showing signs of brain mets, his coordination was ALL OFF. He would go to eat, and couldn't get the fork to make contact with the food, and then trying to bring it to his mouth. Or he'd go to pick something up and misjudge where the object was and completly miss it. It was so difficult to watch, and SO FRUSTRATING to him! But the steriods worked and all of that improved significantly, even before he had the GK. I hope that the food suggestions that were mentioned in the other posts helps. Maybe you could make her some fruit smoothies, berries are supposed to be good for a person in fighting cancer. Take care, Deb

For info on Gamma knife, read a post under the LATE STAGE NSCLC and look for a post by Alyse that states in the topic title something like: sad news and want to know about gamma knife. I posted a reply about the procedure, my dad had it in Jan. 2003. I hope this helps. Good luck with your mom, the beginning is a time where you reel from all the info. (and lack of it, too), but there is much that can be done for your mom. Keep us posted, and take care, Deb

Hello Karmas dad. I just wanted to say that my dad was diagnosed with NSCLC in Jan 2002. He had 3 different types of chemo and is now on Iressa. The cancer had metastisised to his brain in December and he had a procedure called Gamma knife in early January-which completely killed those 3 tumors. His philosophy is that he may not be cured, but he wants to get all of the time he could to be with his family...and who knows, in that time there just might be even MORE that can be done to get him more time. He isn't afraid of dying, he just has alot to live for. And you do too. I don't know what it is like to go through chemo, but with my mom going through chemo for ovarian cancer (literally, as I write this) and dad doing whatever needs to be done for his lung cancer, who knows WHAT the future holds for me. All I know is that it is important to be open to treatment, and there are alot of things my dad did to help with the side effects of the chemo. He took maitaike mushroom-a nutritional supplement that he gets from a nutritional store, he ate LOTS of flax seed (sprinkled it on his cereal, etc...if you like to eat fish, its even better to eat that-but dad dosn't like fish, so he ate the flax seed) These things were to help reduce the side effects of the chemo, and also to aid the chemo in doing its job. And I think it worked. He was fortunate enough that the side effects from the chemo were bearable. What I'm trying to say, in a rather long winded way (sorry) is that there is so much that could be done to help you not only live longer, but have a good quality of life while you're getting treatment. Please consider this. The road is bumpy, but it is doable. I hope that you know that there are alot of "strangers" here that have been rooting and praying for you. Karma is so amazing. I really think that we'd be friends if we knew eachother, we have the same weird sense of humor . Please keep us posted, and try to keep your chin up. My mom is taking anit depressants right now, because depression is very common in cancer patients, it is something to consider, and NOT be ashamed or embarrassed about. Come here and VENT VENT VENT. and share with us all of your questions and concerns...your fears and your HOPES!! You can do this thing. Please consider every option. What the hell, you've got so much to GAIN. THere is much wisdom here. ConnieB, JudyB, KatieB (boy, there sure are alot of B's-I never really realized that) anyway. You could become the voice of wisdom, too, for someone else that will (unfortunatly) inevetebly come along...and you can share YOUR story, and help them get through this thing. Take care, and come back!!! Deb

Teet, Great news...you deserve it. A toast " Enjoy that little girl and have a GREAT Mothers (Grandmothers) Day!!! (CLINK) CHEERS!"

Don, just wanted to say that we are all so lucky to have you here to provide your words of wisdom. You are a kind and gentle soul. Add me to your fan club. Thank you for all of the support and advice that you provide. Take care, Deb

Oh, Renee, you have nothing to be ashamed of and EVERYTHING to be proud of. You have done, and continue to do, right by your mom from the beginning. Right now, she is just not herself. And there is nothing that she or you could do about it. In a nursing home she will be cared for and safe. Your children need you, and your boyfriend...and YOU need YOU! Try to take care of yourself. Don't beat yourself up. You are doing the right thing. Just remind yourself and your children of what your mom is really like, what her personality and soul are REALLY like. Her acting out can put you and your kids, and HER in danger. Your mom would understand...she loves you...and always will. Please take care, and keep us posted. You are in my thoughts and prayers. Take care, Deb

Hap-py an-ni-ver-sary, hap-py an-ni-ver-sary, hap-py an-ni-ver-sary, HAP-PY AN-NI-VER-SA-RY. (remember that song from the Flintstones? when Fred got Wilma a stolen piano from the back of a truck , and then he and Barney sang that song to her for their wedding anniversary? "psst, hey mac, you want a piano?) Anyway, I digress. A TOAST "To a Wonderful anniversary, and MANY MANY MORE TO COME!!!!! (CLINK) CHEERS!!! " Take care, DEB

I agree that a second opinion is a good thing, especially if your gut tells you so. When my dad had brain mets in Dec., his doc immediatly scheduled whole brain radiation, but we took dad to a neurologist to see if he could get Gamma Knife. Now, it is a very individual thing, what type of treatments a person wants, but Dad agreed that if he qualified-medically-he wanted to go the Gamma way. He did, and all went GREAT. A second opinion is helpful because, believe, that doctors tend to have a 'comfort zone' that they seldom will venture out of. Thats not to say they're wrong, but you could be missing out on another perspective, another way, that would be better for your mom. Just my opinion. Take care, and keep us posted about what you and your mom decide. Deb

Cherry, welcome to the board. I agree with all of the responses above. And as far as that "monster" growing inside you-There is much that can be done to stop it. You mentioned you still have a teenage daughter, a son getting married, and a wonderful man in your life...well, sounds like you're pretty busy, and I agree SO MUCH TO LOOK FORWARD TO. The road may be bumpy, but its well worth traveling-especially with all that you have that is good in your life. What I have learned through my experience with my father is this: 1. Ignore the statistics, they're outdated and non-specific regarding a persons age and overall health before the disease, not to mention all the new technology that is used in treatment 2. Take one bump at a time. Whether its chemo, and possible side effects, or mets, whatever. Just approach each bump with focus and determination, and try not to worry about the others that may or MAY NOT be coming up later. 3. RESEARCH, and trust your gut. The doctors work for YOU-and if knowing that gives you a bit of a power trip-GOOD!!! and come here whenever you need to. There is no such thing as a stupid question or feeling, and no such thing as "rambeling". You are not alone. Consider us your cyber-wall. Use us as shelter, as a sounding board, and remember that you are a part of that wall, and its a great thing to be. Take care, Deb (a fellow 'brick'

Donna, sorry I'm late, but WELCOME!!! I am a fellow long islander, my dad was dx in Jan 2002 NSCLC. I have read many of Deannas posts, and not only are you lucky to have her for a daughter, but its clear that she is lucky to have you for a mom!!! I think that its SO GREAT that you have decided to join us, I wish my dad would. But, he's a man of few words, so I guess it would be difficult for him to open up here. Anyway, just wanted to welcome you-and say that I look forward to many more posts by you!!!!!!!!!!!! (not to put any pressure on you or anything ) Take care, Deb

My dad has NSCLC, but extensive so surgery is out of the question. My mom recently had to have a complete hysterectomy-she has ovarian cancer and lucked out that it appears NOT to have spread. I told her this when she was saying she dosn't want surgery..."They have caught it early, you have an excellent chance of survival...if you don't have the surgery it would be like slapping God in the face." The fact that your mom caught the cancer so early is VERY RARE, and you must emphisize to her that there are MANY people here, on this board, that would give almost ANYTHING to be in her shoes (or to have their loved one be in her shoes), and if she dosn't follow through with the surgery to save herself, I don't mean to be harsh, but it would kindof be like slapping us in the face. I am, and I think its safe to say that everyone here is, very happy for your mother that she is lucky enough to be able to have surgery, and tell her that if she were to turn the surgery down, she would be turning down a VERY PRECIOUS GIFT. Good luck. I know she is scared, but she can get through this. She will get through it. Keep us posted. I hope your mom is able to see the big picture, it is a beautiful thing. Take care, DEB

Gail, GREAT DAY!!! My dad is on Iressa, and I think that he's really benefiting from it, too. I believe that when the Iressa works, IT WORKS!!! Keep us posted, and ENJOY! A toast "to more walks around the block, shopping sprees, and DOUBLE HAMBURGERS (CLINK) CHEERS! " Take care, Deb

Oh Renee, I'm crying as I read your post. And gave a little chuckle at your story about the remote. I wish I could be there to help you receive everyone. Do you have a close friend that could help you, or a clergymen? Maybe if you ask someone that would be coming to your house anyway, to arrive earlier to give you some support. The money issue is hard. My mom says that when my grandfather dies, she will have to add to the money that Social Security provides, because it isn't that much. As far a doing your moms makeup, I'm sure she'd be fine if you just gave very specific instructions to the funeral home on what she would want done with her makeup. I agree, to do it yourself...OUCH!!! You could be sure to check it out before the viewing, to be sure she'd approve. Do hospice stay all the time? Or do they come at scheduled times? I can't imagine how difficult this whole process is for you. But it is a process, and you will be receiving many prayers for the strength to get you through this. Please keep us posted, if you ever want to chat, maybe you could post a time that we could meet int he chat room. Even e-mail with one. Please try to take care of yourself. If I see you are on the forum at the same time as me, I will peek into the chatroom to see if you're there. take care, God bless you, Deb

Andrea, Let me first welcome you to the board. You will find much information and support here, the people are GREAT!! My dad was diagnosed with extensive NSCLC in January 2002, mets to both lungs and the spine. All other tests came up ok. It has been a long journey. He underwent two forms of chemo, the last of which was Taxotere, then he was placed in the clinical trial for Iressa. According to dads last CAT scan the Iressa seems to have slowed the disease, and seems to be shrinking the tumors a bit, too. From what I have researched, once NSCLC spreads to more than one lung, it is considered to be a more advanced case. But that is not to say that just because surgery isn't possible, that your dad will have "less time". Although surgery is more desirable, it is not the ONLY way a person can become a long term survivor. From what our dads oncologist said, the Iressa couldn't be started until at least 2 forms of chemo were tried and prooved to be unsuccessful. Although the chemo didn't help my dad, his disease was progressing VERY slowly. He did suffer a setback in December when we found out that Dad had brain mets, a common thing in lung cancer, but AGAIN, THERE IS MUCH THAT CAN BE DONE FOR THEM. He had Gamma knife on the three tumors, which is done as one treatment, and virtually kills the tumors-leaving healthy tissue alone. The tumors have been reabsorbed by the body, and Dad is doing pretty well. He gets tired, but is pretty much able to live life as usual. Even through the chemo, his quaility of life was pretty normal, aside from getting tired a few days after chemo, and an annoying metallic taste in his mouth. So, please, try not to dispare. It is a tough battle, but one worth fighting. Don't pay attention to "statistics", they are old and inaccurate and, quite frankly, aren't worthy of my attention. I have more important things to be concerned with-like arming myself with information that can HELP my father, and planning my daughters 5th birthday party-which we never thought dad would make, but he most certainly will. My dad hasn't had the need for regular radiation, yet. But we'll cross that bridge when we get to it. In the mean time, the best thing you can do for your mom (and for your own sanity)is to ASK QUESTIONS, ask the doctors, ask here-my quote is that Knowledge is power-and the only way to gain knowledge is to ASK, ASK, ASK. We had my dad pretty much cut white granulated sugar from his diet (the research I've read suggests that cancer "feeds off of sugar"), he added flax seed to his diet (nutrition store)-or if your mom likes fish, thats even better, and he took Maitake Mushroom (aids against side effects of chemo, and is supposed to aid the chemo in doing its job). My point is, we havn't been able to cure Dads cancer, but we've been able to slow it down so that he has been able to enjoy his life-and we have been able to enjoy having him around. Prayer has helped, and venting here has been KEY in my getting through this thing. Keep us posted, and take care and HOPE. Without HOPE, would we ever take any chances in life? Would we DARE to apply for a job, or a school, or HAVE CHILDREN? NO, NO and NO. Life and hope must walk hand in hand, or we will become crippled by doubt and fear. Take care, Deb

Renee, Hospice will be of great help to you and your mom. There is nothing to make it "easy", but they will be of help in tending to your moms pain, and yours, too. Your mom has been very lucky to have your help and support-and I'm sure you'd not have it any other way, either. I can't imagine how it will be when it is my parents time, whenever that will be. Cry, let it out. Tell your mom everything that you want to or need to say, so that nothing goes unsaid. Even if you're not sure that she is hearing you, say it anyway. I remember reading somewhere that the hearing is the last of the senses to "go", I don't know if its true. But I believe that your words will get through, and will serve as a comfort to you, later on. I know it has been so hard for you and your mom-going through this. I wish I had some magic to sprinkle over and make everything better. Were we all able to be there with you, in person, we would. Please continue to vent here; know that you are in alot of peoples prayers. Try to take care, Love, deb

Carleen, Sorry I'm a bit late-but welcome to the message board. You've gotten some great advice here. Just to let you know. when my dad was DX with NSCLC in Jan 2002, I, too, had a difficult time thinking when in the presance of the doctors and would only be able to think of questions AFTER the visit. SO, I wrote down my questions, called Dads oncologist and requested/demanded to speak to him so that I could get answers. I always began by thanking the Dr. for taking the time to speak with me on the phone, and that he must excuse me if some of my questions seem dumb, but I don't have a medical degree, and that this is the only Dad I have-and I am determined to understand as much as I can. He was always great about it. And it is VERY TRUE...THERE IS NO SUCH THING AS A STUPID QUESTION!!!!! Go with your gut, if something is bothering you about how you are being treated at any time by the medical staff-speak up. Consider them YOUR STAFF-YOURS AND YOUR HUSBANDS EMPLOYEES...and you CAN FIRE THEM (kinda gives you a power trip, huh? GOOD. Now, also be warned that this is your safe haven. The rules are simple: 1. there is no reason to apologize for "rambeling", as there is no such thing here. Make your posts as long as you like. Just get all that you want to say, or ask, out of your system. It is a great stress reliever. 2. never apologize for having a bad day, come here and VENT...VENT...VENT... It is a great stress reliever. 3. If something strikes you as funny, laugh. You may find yourself making "light" of a difficult situation, it is normal, and even needed. My sister and I make jokes all the time about our situation with our parents (dad Lung cancer/ Mom, ovarian cancer).. No one else gets it, but the people here DO. So, laugh. It is a great stress reliever. 4. No question, or piece of advice is dumb. Even if you just want to let someone know that you're sending positive thoughts, or whatever. Sometimes I find that, even though there are times I can't even boost my own spirits, when I come here and offer support, I feel useful again. It is a great stress reliever. 5. You're among friends here. Strike that, make it FAMILY!!! And THAT IS A GREAT STRESS RELIEVER!! Well, thats it. Take care, Deb

Ni, have you looked into Gamma knife for the brain mets. Unlike whole brain radiation, Gamma knife is radiation that pinpoints the brain tumors, killing the cancer cells...the tumor is considered dead (only one treatment), and is then-in the time it took to grow in the first place, reabsorbed by the body. I know that you are frustrated, and it is understandable. Is he on decadron, or some other type of anti inflammitory to help ease the swelling of the brain, caused by the tumors. It is actually the swelling that causes the brain malfunctions, ie. seizures or poor hand/eye coordination. Are they giving him anything for pain, seeing as you said he is in his "last stages", it would seem that morphine would be given. The morphine would probably cause him to be in and out of conciousness/although with the seizures, I really am not sure of what would be alright to be given. I know that if/when my dad gets to that stage, I would prefer years ago, and he was put on morphine for the pain. It caused him to be pretty much unconsious most of the time, but at least he was not in any pain. I hope that this was of SOME help. I am sorry that things have gotten to this point for your dad. Please keep us posted. Take care, Deb

CamperJones, you mentioned that your mom is on Decadron-I take it that there are brain mets? My Dad was on Decadron for his brain mets, and just so that you know, one of the side effects is a short fuse. Just a thought, since you mentioned that she gets aggitated when you ask the doctors questions. Just wanted to let you know, that the agitation and also an increased apetite are common side effects of decadron. keep us posted as to how she is doing, everyone here has great insight- I agree with all of the responses. take care, Deb

Mary, its great that your sister is going for the Gamma Knife. My dad had it in Jan, and is doing GREAT!! You mentioned Staten Island, are you from NY? Let us know how the Steriotatic Body Radiosurgury goes, I like to keep everything in my mind, in case something comes up with my dad, or even with my mom, now. Keep us posted, as Judy said, Fingers, toes and eyes crossed. Sending a prayer and positive vibes as well. Take care, Deb

YAAAAAAAAY Lauries Mom!!! That is SO GREAT. It will probably feel good to return to a more normal life. Prayers being sent for the 7th, and for continued success in survivorship!!! A toast, "to Lauries Mom-on the excellent job she did in raising a teriffic daughter, and returning to work to do an excellent job (clink) CHEERS ! Keep us posted, Laurie. Take care, Deb

OK, Rosanne, before my new medication kicks in and my aggravation level calms down, do you want me to go and break a few legs? I'll do it. You just give me the nod. I'll take care of it. Seriously, I know what you mean. Next time they say the whole "not curable" thing you should just, dryly, say..."and you're telling me this because?????" better yet, tell the doc that you think he should get a brain MRI, because apparently he's forgotten the 50 other times he told you that its not curable, and they might want to 'check that problem out'. Take care, Deb

WHOOOHOO Estelle!! EXCELLENT NEWS!!! A toast to you "to continued shrinkage (clink) CHEERS!!!" Keep us posted about the next CAT. Take care, Deb

Don, Just fill up a glass or two with sparkeling cider, raise your glasses and toast "To CONTINUED GOOD NEWS for you and Lucie (clink) CHEERS! Continue to take care, Deb

OK, OK. What am I doing posting in good news? Dad Dx NSCLC, Mom Dx ovarian cancer (got the word today)-chemo to start soon. But, Heres the good news: I've had it pretty damn good, despite all of this, I STILL have it pretty damn good. I had a really good childhood -money was tight-but the love was always ready to be doled out. And still is. I intend on giving my children the same. I mean, I have SO many friends whose parents are "healthy" right now, and I STILL wouldn't trade off for anything in the world-friends whose childhood were not so loving, and, well, not so happy. Who am I to complain? My parents were, and STILL ARE, GREAT PARENTS. Sick, yeah, but still great! Aunts, Uncles, friends, YOU GUYS-have been so wonderful and supportive. So, who am I to be complaining? I don't expect to coast through life. God has given me SO MUCH to be thankful for-my parents, my sister, my husband and children, extended family-grandparents, everyone...to be anything less than grateful would be like slapping God in the face. I have no idea how things will go. What lies ahead. Is it alot to absorb? Absolutly, but the road has been smoothe for so long-and I can't forget that. I remember a line in the book "The Color Purple" where one of the characters said "I think when you walk by the color purple, and don't notice it, it pisses God off...God just wants to be noticed..." That is exactly how I feel. Look at all that is going on in the world. So, my GOOD NEWS is-that despite all that is going on with my parents health, I'm determined to remember that I have had it really good for a long time, and I am determined to be happy and appreciate that fact. My parents have been great to us, and its payback time. Thats just how it goes. And thats fine with me. Of course I'd PREFER that they not be sick, but all things considered-you never know what you'd be hit with if you got your wish to trade off your problems with someone elses. Its just not worth it. I'm lucky, thats my good news. I have always been loved by my parents and family, I have wonderful friends (that includes you guys). And, apparently, I never fall short of things to say . My GOOD NEWS is that I can still see the beauty in life; hear the laughter, I just have to squint a little, and focus my attention more. But its there....it ALWAYS HAS BEEN. Take care, Deb